Informed consent: A broken contract

NATURE | NEWS FEATURE: June 20, 2012.
Late in May, the direct-to-consumer gene-testing company 23andMe proudly announced the impending award of its first patent. The firm’s research on Parkinson’s disease, which used data from several thousand customers, had led to a patent on gene sequences that contribute to risk for the disease and might be used to predict its course. Anne Wojcicki, co-founder of the company, which is based in Mountain View, California, wrote in a blog post that the patent would help to move the work “from the realm of academic publishing to the world of impacting lives by preventing, treating or curing disease”.

Some customers were less than enthusiastic. Holly Dunsworth, for example, posted a comment two days later, asking: “When we agreed to the terms of service and then when some of us consented to participate in research, were we consenting to that research being used to patent genes? What’s the language that covers that use of our data? I can’t find it.” Read More